Palliative Care for Cancer: Survey Reveals Differences in Patients' and Caregivers' Wishes
Both survey groups clearly agreed on one thing – that patients prefer to avoid severe pain and to die at home. They would rather not die in a hospital or an institution.
They disagreed on other things. Caregivers were more likely to prefer aggressive life-sustaining treatments for patients than patients themselves; and extending life was not a prime consideration for the patients.
These were among the findings of a survey led by the Lien Centre for Palliative Care (LCPC ) at Duke-NUS Graduate Medical School.
The survey was motivated by concerns that patients may not be getting the end-of-life care they prefer. It was jointly done by LCPC ’s Executive Director, Professor Eric Finkelstein, and Assistant Professor Chetna Malhotra, the lead author, with assistance from the National Cancer Centre Singapore (NCCS).
A total of 211 NCCS outpatients with Stage 4 cancers and their primary caregivers (mostly the patients’ children) were interviewed between February 2012 and March 2013 and asked to choose their most-preferred end-of-life scenarios from a series of options.
These included years of life remaining, degree of pain experienced, place of death, level of burden on caregivers, quality of health care experience and cost.
From the results, the authors quantified their willingness to pay to improve the end-of-life experience – something past research did not show. It was found that patients were willing to pay about $31,000 annually to be able to die at home – more than the $22,000 they would pay to avoid severe pain and the $18,570 they would pay to extend life by a year.
“Patients have a strong preference overall for dying at home versus in an institution,” said Prof Finkelstein. Nearly 29 per cent of patients and 23.7 per cent of caregivers polled zoomed in on dying at home as the most important thing, and were unwilling to make any tradeoffs at all, he said.
Yet, caregivers were found to be poor proxies for patients’ preferences. They were willing to pay much more than patients were for most end-of-life improvements.
This was especially true when it came to extending a patient’s life by one year – caregivers’ willingness to pay was three times higher, suggesting that they may be more willing to initiate expensive treatments in the hope of extending a patient’s life.
“It’s tough for caregivers to say enough is enough. Patients are more likely to say that first,” said Prof Finkelstein.
He said that in Singapore and most of Asia, caregivers play a significant role in making decisions for patients, and it is accepted that physicians and caregivers collude to make treatment decisions. “Patients may be the last ones to get their voices heard.”
Prof Malhotra said: “What this means is that physicians need to go ahead and really talk to patients to elicit their preferences, as opposed to just relying on caregivers to tell them what a patient needs. Focusing so much on extending life with new treatments may not be the right way to move when we can do just as well by making sure these patients don’t die in pain and get to be at their preferred place of death.”
The research paper, published in Palliative Medicine, said that in Singapore, only about 30 per cent of all cancer patients die at home.
It called for more to be done to enable home deaths for those who want it, suggesting further efforts to improve the capacity and outreach of home hospice services.
It also suggested that a greater focus on pain management and supporting home deaths would be in line with the preferences of advanced cancer patients, and from that perspective, also a more appropriate use of scarce health resources.
The next step in the research involves plans to apply for grants to develop an e-learning package to help physicians improve their communication with patients and caregivers, said Assistant Professor Chetna Malhotra, Lien Centre for Palliative Care (LCPC ), Duke-NUS Graduate Medical School.
The programme will first be designed for oncologists before being offered to doctors from different specialities. The researchers are also considering developing simple decision aids that could be in the form of a questionnaire which patients can answer while waiting to see their doctors. Their responses can be summarised and conveyed to the doctors who will then be in a better position to recommend treatment in line with the patients’ preferences. For example, if a patient indicates that he really wants to avoid pain, his doctors can make an earlier referral for palliative care, said Professor Eric Finkelstein, Executive Director, LCPC.
With doctors experiencing high patient loads, such aids can make for faster and clearer discussions between patients and doctors, Prof Finkelstein added.